Hurry Up and Wait: Untold Stories of the ER

 

He had a half inch cut on his finger… it wasn’t even bleeding that bad and certainly didn’t warrant the barrage of “Grey’s Anatomy” style nurses snatching him up and herding him towards the coveted double doors.  I sat watching him like a hawk from the minute he walked in to the minute he was treated like he had just come in from an unfortunate machete accident.  He wasn’t questioned.  He wasn’t drilled.  He wasn’t made to feel as invisible as his illness.  As I watched him disappear down the hallway I couldn’t help but feel like I had just been slapped in the face…by medical personnel….again. 

As usual, I have gotten ahead of myself, so allow me to back up and start from the beginning…ok maybe not the very beginning, that would take a small lifetime to write…but the beginning of my downward spiral of health.  New and strange ailments aren’t new to us.  As sufferers of chronic illnesses, they pop up unannounced and most certainly uninvited all the time.  At first it freaks us out, but then we just learn to roll with the punches and just add it to the “discussion list” we take to our doctor’s appointment.  That’s the way I felt when I started noticing a pronounced shortness of breath.  It concerned me at first because, well, I’m Helga, Fitness Trainer of the Universe and I just knew my heart and lungs were so pristine they gleamed like a diamond. *I hope you’re getting the blatant sarcasm here*  How could this be happening to me?  Simple…it wasn’t.  Deny deny deny…it’s a mantra that quite honestly could be tattooed on my forehead.  Somehow I forced myself into believing that it wasn’t something to overreact to and as most other symptoms, would go away with time. Mistake #1

Not only was I ignoring the elephant in the room…I was ignoring the elephant that clomped right over and sat down on my chest like a trained circus pachyderm with a grudge.  I went about my daily activities huffing and puffing and looking at stairs as if they were the tool of the devil.  I was even able to ignore it as I climbed on my trusty treadmill and then proceeded to drape myself over it like a wet noodle only 30 seconds later.  I wasn’t, however, able to ignore it when I began coughing up the familiar metallic taste of my own blood.  Folks, it’s easy to ignore something you can’t see, but it is a whole different enchilada entirely to try to ignore something coming from your lungs that under no circumstances should be coming from such places.  It was time to call in a professional…..yes, the internet! I am the queen of self-diagnosis and this time was no different.  Upon ruling out tuberculosis and whooping cough (pretty much sure those infant vaccines took care of that) I promptly convinced myself that I had a minor cold and said symptoms would relieve themselves in a few short days.  Mistake #2

Of course the symptoms did go away.  I knew they would.  If your car makes a clickety-clack sound as you press the gas pedal, you can ignore it until you are so used to it that you don’t hear it anymore, but that doesn’t mean it’s gone.  It means that you are so good at this game called denial that you don’t realize it never left.  So, I continued on…working, mothering, traveling, cleaning, working, did I mention working?  I pushed forward until Lupus had finally had enough and pushed back hard enough to knock me flat on my butt.  The symptoms were back and this time they were taking no prisoners. Even I couldn’t deny that something was seriously wrong and it was time to do something about it.

Bear with me here, we are steadily moving along with the tale of the stubborn Spoonie.  Finally, I called my Rheumatologist and true to Murphy’s Law, she was out of town for 4 days. However, her assistant had used her super-duper secret phone number and per her instructions I was to go directly to the emergency room…do not pass GO, do not collect $200.  There was only one slight problem…I was home alone with my 3 children.  I don’t know about you all, but I would rather have hot pokers shoved into my eyeballs than to sit with 2 cranky pre-teens and an over-sugared 3 year old in the waiting room of the hospital.  So, I did what any normal girl in denial would do….I didn’t go.  Mistake #3

It’s around this time that word had spread about what was going on and I was getting hit left and right with tweets, facebook messages, calls and texts from friends and family telling me in no uncertain terms that they were threatening bodily harm unless I complied with doctor’s orders. (Christine- The spoon lady herself called, txted, yelled and more!)  With a shake of the head, I took their advice in stride and went straight….to work.  Yep, as you all know, my company would lose all its profit margin and wither miserably into an imploded mess without my presence. *again…sarcasm*  Asking my boss if he wanted a soda from the break room proved to be my undoing.  He watched as I stumbled up three steps, huffed like a 90 year old chain smoker, stumbled back down, handed him his can and fell against the wall sounding like I was about four seconds away from total collapse.  It wasn’t long before, amongst threats of termination, I was in my car on the way to the hospital.

Let me stop here and say I was totally duped in the first 10 minutes of walking into the emergency room.  Imagine my surprise when I was immediately checked in with chest pain and respiratory problems and didn’t have time to so much as go to the little Spoonie’s room before I was called to triage.  I was thinking to myself, “Hey, Self…this isn’t so bad, for once you are being taken seriously.” Unfortunately it was around this time that I came face to face with Nurse CrankyPants.  Nurse CrankyPants asked me what was going on and then stared blankly at me as if all he was hearing was the “wa-wa-wa-wa-wa” of Charlie Brown’s teacher.  My pleasant hospital experience had just taken a not so pleasant turn.  After rolling his eyes at my answer of “10” to his “So how is your pain on a scale from 1 to 10” question, he slapped on the blood pressure cuff and began typing away on his computer.  It was no shock to me when my blood pressure came back elevated.  Between my procrastination and Nurse CrankyPants’s Kevorkian bedside manner, I could feel it rising by the minute.  Still, I was encouraged by an immediate EKG and chest xray.  I just assumed that I was being taken seriously.  Mistake # 4

So this brings us back to paragraph one, and back to my story (see, I told you we’d eventually get back here).  I will spare you all the four letter details as I sat in the waiting room for 9 hours.  Yes, you read that right….9 hours.  I can’t even tell you what goes through a sick person’s head in the time span of 9 hours, however, you can pretty much bet that none of it carried less than 20 to life.  One by one, the waiting room filled with bodies until people were lying all over the floor and the room suddenly looked like a refugee camp of the sick.  I was tired.  I was sleepy.  I was in pain.  But most of all I was mad.  I was mad at being dismissed as a “non-life threatening emergency”, at being left to cry alone with my own pain, at knowing that because I didn’t outwardly look sick, I wasn’t being taken seriously, but most of all because skater boy with the trendy Bieber haircut  and a small cut on his finger got a line cut pass.  That didn’t sit well with me…and trust me; I had been sitting long enough to know the difference.  With smoke coming out of my ears and an inferno of fire igniting my hair, I marched over to Nurse CrankyPants and demanded to see the doctor.  Apparently there is such a thing as “crazy eyes” because within 15 minutes my name was called and I was being led through the double doors that I had watched enviously for 9 hours.  This was it…I knew was going to be treated, fixed and sent on my way before midnight.  Mistake # 5.

I became either a human pincushion or a medical intern science project as four different nurses tried six different times to correctly insert my IV.  I had been prodded so many times that I was ready to snatch the needle out of their hands and find the vein myself.  Right before my sneak attack, one of them found success and I was ready for the remaining tests.  For what, you ask?  Pulmonary Embolism or Deep Vein Thrombosis.  Nothing like scaring the bejeezus out of you while you’re entire backside is flapping in the breeze because of a highly unflattering hospital gown.  I endured an ultrasound, dye-infused CT scan, and another EKG, all of which I was pushed bed first down the hallway by Mario Andretti, the hospital navigator.  At this point it wasn’t looking good for making out it of the hospital with all limbs intact.

Nine hours later (yes, again, 9 additional hours), I was awoken by Nurse Whats-his-name to tell me that thankfully, I was not having a Pulmonary Embolism.  This was rather good news, considering I would have probably dropped dead in the hallway by now if it had been one.  However, I finally had a diagnosis – Pleurisy.  I had tears in my eyes…at last, there was physical evidence of my symptoms being real…symptoms that no medical personnel could deny or tell me were in my head.  Well, that is until he followed it up with, “Of course you may be in a Lupus flare, but we can’t prove that.”  If I had a bedpan, I would have thrown it at him.  I just couldn’t escape it no matter what the situation.

By 6am the next morning I was discharged after an intravenous shot of steroids that had me feeling like my hair was on fire and my entire lower half had spontaneously combusted.  I was handed a prescription for more steroids (yeah, like I didn’t already have an arsenal of those at home) and strict instructions to call my Rheumatologist.  I started laughing at how things always seem to come full circle.  Calling my Rheumatologist is what started this fiasco.  It only seemed fitting that it was the way to end it, too.  It’s four days later and I feel as bad, if not worse than I did the minute I walked into the hospital.  This Pleurisy thing is no joke and some day I hope to be able to take a deep breath and tase Frank the Elephant off of my chest and back in the zoo where he belongs.  Do I regret going to and staying at the emergency room?  No.  Would I voluntarily do it again?  Hell no.  My experience once again showed me the amazing ignorance that is out there with medical personnel regarding invisible illnesses.  We seek out help with our head down and eyes averted…knowing that chances are, we will be written off as a hypochondriac.  Unfortunately what people can’t see…they don’t understand….and if they don’t understand it, then they ignore it.

Denial.  Apparently it’s a two way street.

Article written by Senior Editor, Stephanie Kennedy.

Stephanie lives in Fayetteville, NC with her husband and 3 always hyperactive and occasionally adorable children. She was diagnosed with SLE in 2001 at the age of 27 and in the time since, has added Scleroderma, Hashimoto and Celiac disease. In her day-to-day life she is a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and a part-time blogging snarkzilla.  She can always be found somewhere in social media-land causing some sort of trouble.  Find her on twitter at @steph_in_nc or on facebook at Stephanie Welborn Kennedy.
©2024butyoudontlooksick.com
  • cheyanne

    wth i hope that he doent act like that all the time

  • Ebony

    I can not count how many times this has happened to me. I was just diagnosed with Plueresy and my doctors have been just looking at me crazy. however, I have a hx of blood clots so when i asked for the tests to make sure they (my doctor) and the ER hesitated. still having a racing heart and difficulty breathing I am just dealing with it at home.

  • Loved the article. I can definitely relate! 🙂

  • Darlene

    I’ve gone to the ER on several occasions – we live in a small town and most of my providers are here – but the one that sticks out in my memory is the time I went because I was having an allergic reaction.

    Because of my history of allergies to meds, I know the symptoms and when they started to present themselves, I told my hubby I would drive myself, he could drive me or I would call 911. I took some benedryl knowing it wouldn’t help much and off we went.

    When I walked into the door, I was experiencing the SOB and told the clerk as I signed into triage. I wasn’t even allowed to sit down before they had me back, in a room, all vitals taken and then poof, the magic stuff into the IV to reverse the reaction.

    The attending that came in (very very young) wanted to know “how I knew” I was having an allergic reaction and I told him I had had them in the past. Now I carry an epi-pen. Along with a loverly list.

    It sucks when we don’t get taken seriously for our pain. I have had pleurisy and also costocondritis and have found that warm heat helps me the most, but I also end up on a dose of toradol. And I go see my pulmo for it because with COPD and asthma, he doesn’t play around with my resp issues any more.

  • Steph

    You are exactly right Babs, and I totally hear what you are saying. However, I didn’t have one ounce of an attitude in the beginning when I was treated rudely and unprofessionally with the eye rolling and sarcasticness. I was actually quite pleasant until I could no longer feel my rear end from sitting in the seats for the majority of the entire day.

    Again, this was just my 2 cents on a personal experience I had. Any generalizations about nurses and/or medical personnel wasn’t indended and if it came across that way then, my apologies.

  • Babs

    As an RN as well as a patient, I can see both sides of the ER stories. I have a policy of NEVER telling a nurse or doctor that I am a nurse, they eventually find out and wonder why I didn’t say anyhting. Why ? Because I want to be treated as a person who is ill, not as the nurse who is ill. I have found that being assertive is your best tool, a tool used from the second you walk in the door. Do not allow anyone to put you down, belittle your symptoms or ignore you. But the nurse side of me knows that medical people DO CARE. If you are waiting 6 or 9 hours in the ER, guess what guys..it means they are busy ! If they are going crazy with patients and someone who has been waiting forever comes in with “attitude”, they may be treated with an “attitude”. I am not saying this is right, however we all must look at things from both sides. We must all learn to be the good patient and also respect the medical team who is trying !

  • Geez Stephanie! What an experience! I’ve never had to wait in the ER that long ever! We don’t live in a large city, however. Love your article but HATE that your experience was so awful!

    I remember one time sitting in the waiting room for 2 hours for pleurisy, laying on chairs and not even caring how many disgusting germs I would catch all while making my (then husband, now ex) go up to the front desk and frequently ask how much longer it would take. He was not stern enough, so I eventually mustered the energy to go up to the front desk and started asking, when tears suddenly just flowed with no end in sight.

    Once trying to breathe through the tears and chest pain and actually writing a note down instead saying that they need to take me back asap or I would report them, I was seen immediately and taken seriously.

    Major kudos for what you endured and healing hugs for many more days (hopefully not weeks) of waiting until the pleurisy clears up or at least starts to provide relief.

    Melissa

  • Geez Steph, what a trip you’ve been on this past week! I’m just glad you are home now, hopefully recovering.

    The ER is my third home, second being the Home Depot. Truth be told, I’d rather dive into trash at the dump while listening to Justin Beiber than step foot I the ER.

    Once my Rheumy instructed me to go right away because I had a fever of 104, and my daily fevers are about 101. She informed her team that works out of the same hospital I went to the ER at about the issue, that I may have Stills Disease, but she wanted to rule out any additional infections. I waited for seven hours to be seen. They looked at me for five minutes and I formed me that they didn’t know what to do, the couldn’t contact my rheumy, and just sent me home.

    Turns out my immunosupressant had triggered bronchitis, which came out the following day. They really are completely useless!

    Wishing everyone a plethora of spoons, you can never have too many!

  • Thank you so much for writing this! I’m one of those people that the triage nurse never takes seriously. From cracks about who gave me all these pills, to outright calling me a drug addict, I’ve heard it all. My medical history is was more complicated, then the random dumb guy who hurt himself playing football, and it seemed to only be taken seriously when a parent was bringing me in. In college my doctors would send me to the ER a few times a week for IV dillaudid to treat central pain syndrome flair ups. Even with my neurologist telling them exactly what to do, there was always the fight that CPS is so rare that I couldn’t possible have it. When I mention that I also pseudotumor cerebri, and my eyes need to be checked, they usually just glaze over with no clue. I recommend finding a local smaller hospital where they can get to know the regulars. When I was in HS we always went to the same ER the quickly got to know my history, and were able to treat me allot better.

  • Rebecca

    Can you get a doctor to write out a brief description of the list of what’s wrong with you? I have one, and it helps a lot with ER docs who won’t listen. Mine says at the bottom to listen to me, as I’ve done this more than they have!

  • Carla

    I honestly don’t know what I’ll do if I can’t have my dad with me on those types of visits. Nobody, and I mean nobody can get away with that when he is around. He can charm them when necessary or scare the pants off anyone who messes with his wife or kids. I think that when he is gone (he’s 82 now), I’ll just have to shoot them instead (lol).

  • Beth Worley

    Ah, the terrors of the ER. I have had to write complaints on ER docs myself, and the next time I went I got better service, but still not great. I don’t expect I’ll ever get the best of care, but I’m lucky enough that there is three emergency rooms where I live, so if one isn’t treating me well enough I can always go to one of the others the next time. And I’ve learned to always have an advocate with me, because there are times when I’m unable to speak up for myself, but I know that people like my mother will not let them get away with treating me badly. I’ve seen my mother give doctors tongue-lashings that have literally backed them into a corner, making them change the way they treat me completely! So, a good advocate is definitely a bonus in my book! And I have learned to take my mom whenever I can… lol

  • Lizzie

    Awesome article. I’ve been to casualty (or the ER if you’re an American) once, and never, EVER again.
    …Well, I nearly went with the first bout of gastro I got from the childcare industry… But I couldn’t leave the toilet long enough… ANYWAY, moving right along from that…

    I was 16, and had been diagnosed with CFS/FMS for around 5 years. I also have had asthma since I was little.
    I woke up in the middle of the night with a really bad pain in my chest, and unable to breath properly. After I’d gone through about 4 hours worth of “take six puffs, wait and repeat” my mum took me to the hospital.
    When I got there, they took my pulse which was over 180 cos of all the bricanyl, and they took my peak flow meter reading – which was under 90. My normal peak flow rating is 520.
    The doctor said they would put me on a nebuliser to see if that helped, but as he left my mother informed him of my CFS/FMS. He nodded, and when he came back I was sent home with a diagnosis of heart burn and a panic attack.

    We went home, and I went and sat in a steamy bathroom until my GP opened. We got the first appointment of the day, I got the stuff to put in the nebuliser, and low and behold my “heartburn” went away…

    Hospital doctors annoy me. Very, very badly annoy me.

  • rose fultz

    I complained of chronic low back pain that went into my hip and down my leg and that was in 2002. Through my persistence (I knew something was wrong) my doctor ordered a bone scan which resulted in an x-ray which resulted in an MRI and bone density tests. Then I went for blood work which resulted in a Bone marrow biopsy (4 to date). None of the results were good…I had Tarlov Cysts on my lumbar spine and a stress fracture in my tibia. The MRI showed something very wrong with my bone marrow and the biopsy confirmed it (bone marrow is quite patchy and multi-focal, that of Myeloma, Leukemia, or Lymphoproliferative disorder. My bone density results = severe (high risk of fractures) in lumbar spine and hip/femur. Since then my pain has spread throughout my body in muscles, bones, and joints. I see all my docs on a regular basis. 4 years ago they did complete Lupus panel and my RNP was 1769 (very high) = (MCTD), high positive ANA (lupus), high sed rate and a high c-reactive protein. I’m on a lot of meds. I don’t hesitate to go to the hospital when something is wrong with me even if I have to explain all this to them every time I go. I want them to know everything there is to know about me. We are not cookie cutter people…WE ARE UNIQUE. NEVER let someone who knows less than you make you feel less than them. Be persistent with your Primary. It might take a long time if you are a newbie to get a diagnosis. Learn about your disease and what you can expect. You can’t explain it to them if you don’t know yourself.

  • Denise

    Unbelievably wonderful as all articles on this site turn out to be. I share your stuff with everyone on facebook and beg them to read if they give a damn about me. And I don’t even have lupus…just other invisible illnesses.

  • erin

    Thank you for telling your story and mine.

  • I hope you are feeling better. At this point, if we have to go to the e.r. my husbands first calls my doctor then he calls the patient advocate that meet us in the e.r. This started after filling formal complants against the doctor after him tellin that I had the flu for two months when it was really serum sickness. My fever hit 105 before they put me in ICU. Now I just go to Mayo. Yes it is 6 hrs away, but I don’t want so jerk almost killing me.

  • When I developed pleurisy, Ask A Nurse and I concluded that I felt better with something warm on my chest. I alternated between Kitty and the heating pad.

  • Welcome to the wonderful world of pleurisy. Just what I didn’t need, another health problem.

  • I’m sad to hear you were treated that way. I hope you will soon have some relief of pain and symptoms of whatever it actually is that’s going on with your lungs right now.

  • jill jones

    Bless you! I do not go to emergency rooms for this very reason. Thankfully I have never had something so serious that I needed to because where I live. they don’t care..they look at you like you have ruined their day and just want you gone. Why do people become nurses or doctors if they don’t enjoy helping people? Where is compassion and kindness and do no harm? I just pray I will always be able to hang in there until the next day instead of the dreaded ER…

  • Elspeth

    Oy vey! Been there done that. Hope you’re doing much better now.

    There was one time when I got to the hospital, the ER waiting room was standing room only, and I was immediately admitted – that was when I’d had a really bad asthma attack, was coughing my lungs out (I have the cough variant), the nursing staff put me on a stretcher right in the waiting room, and everyone thought I might need to be intubated (thankfully didn’t need it). You know you’re really sick when there’s an SRO crowd and you get to go first.

    Of course, this was the 2nd day I had been to the ER. The day before, I had a less serious asthma attack, they gave me one round of ventolin inhalant, and discharged me – even though I knew from previous experience that I needed at least one more round. Thus the serious recurrence the day after. Only wish that the medical staff (nurses, doctors, etc.) would listen to me. BTW, during this second episode, I needed an IV to get some solumedrol into my system – I showed the nurses where my “good” veins are – it took them 3 tries before they struck oil and got a vein that didn’t infiltrate. Sometimes I think that when these people graduate, they immediately lose all vestiages of common sense.

  • Tami Brotosky

    That was a great article. I think your description really hit the nail on the head. It is frustrating and exhausting to have to go through the ER for help. If you want to be seen faster, you need to call for an ambulance. Those patients get taken to a room right away now matter what the presenting symptoms are.

  • Thanks for such a well written account of how invisible we are when we don’t walk into the ER bleeding out of our eyes. Been there, done that sister and your article painted a vivid picture of we, the invisibles.

  • Jen

    I was just in the ER a two weeks ago with abdominal pain. I am bipolar and have a hx of cutting. I asked the woman to cover the location where the IV needle is inserted (a simple piece of gauze). She did, but when I was having a difficult time providing a urine sample, she keyed into the bathroom and asked if I was cutting. Ignorance! A history is very different from active!

    I also suffer from arthritis and fibro, as well as being obese. Most doctors can find my symptoms to fit into one of those categories or as a s/e of one of the many meds I take. While the ER wasn’t busy and I was given attn, they also gave no consideration to my discomfort due to my physical, invisible diagnoses. Asking for another pillow or two doesn’t seem unreasonable, yet it was as if I’d asked them for the world.

  • Steph

    Thanks you guys! If only the ones who treat us like this would read, huh?

  • Ivy

    One of your best articles Steph.

  • Kate

    I too go through the derisivness, doubt and bullying everytime I am forced by pain to go to my local ER. I have a rare condition called Intracranial Hypertension or Pseudotumor Cerebri. This results in pressure rising in my skull and my optic nerve. The first time after diagnosis(and spending 18 hours in the ER then a week in the hospital) that I had to go to the ER in my town was a disaster. They made me wait for hours in the waiting room only to be told that I don’t have IH because “no one gets IH anymore.” When I informed the Dr that perhaps he ought to check the computerized records to confirm that I DO have it he called me a liar and a drug seeker. After writing a letter to the hospital administrator I got an apology. You would think this would result in a note in my chart…perhaps a “this woman is not crazy, nor a drug seeker.” But no. Not even close. The rest of my experiences were slightly better but only because I didnt get that same jerk of a doctor. My wish is that everyone in the medical profession could experience one day in the life of a person with an invisible disease. Thank you for taking the time to write your article! It’s a nice but sad reminder that we are not alone…

  • Erin

    WOW – I am sorry you had to go through all of that. Another great article!!

  • Carol B

    I’m so sorry, Steph! It was hard being on the outside, too, waiting to hear from you!

    I have my own horror stories from the ER, including presenting with classic Pulmonary Embolism symptoms (barely breathing with chest pains) while screaming, “I have a blood clot in my leg!” They sent me back out to the main waiting room to wait. The fear in my children’s eyes was nothing compared to the fear in my heart that I was going to die right in front of them in an ER waiting room. That was the only time I was grateful that my ex-husband was a total asshole! He bullied them into getting me back into a room and, six hours later, I was diagnosed with a PE.

    I don’t have a chronic illness (at least not diagnosed), but I have the “fat and female” prejudice to overcome every time I see a doctor.

  • Janessa

    @Crystal – I live in Carroll County near ATL and have had some pretty harrowing experiences in our local ER. I’m wondering if you’re in or near the same city I live in. I’ve also been in Piedmont ER in Newnan and they were actually VERY attentive (but I was having a major asthma attack which experience has shown gets you to the head of the line faster than anything but obvious unconsciousness).

    My latest Tanner ER fiasco was just last week. I was accused of testing positive for PCP!!!! ARE YOU #$&*(@ KIDDING ME??? PCP??? I’ve never even SEEN the stuff, much less ingested it. I was there because I had chest pain so bad I thought I was having a heart attack. I spent 4 days in ICU with critically low BP – and the whole time no one would honor my request to have my tox screen re-run. And because they thought I was using drugs they withheld pain medication…and ironically offered me xanax AND ativan (both of which I’ve refused because I HAVE experienced problems with those drugs and know they’re a very bad idea). It was INSANE. And to top the whole craziness off, I was streeted directly from ICU without a definitive diagnosis for my chest pain. Once they’d gotten my bp stable enough that I could sit up without passing out I was merely a footnote in the history of “crazy lupus patients with irrational or imagined pain.”

    One good thing came out of it: I had a heart cath procedure that confirmed my heart is actually in good shape. But I’d rather be ignorant of that fact than to have had to endure the judgment and insanity of my last visit to Tanner ER.

  • Gail Ruff

    Hate, hate, hate hearing about your all-too-familiar experience in the hospital but love, love, love reading your story about it. Glad you’re home and in one piece.

    The only good thing about going to the ER with chest pains is that you get all the tests done from your hospital bed without having to make yet again five different appointments. We know about those, don’t we? Alarm clocks, dressing, driving, waiting, waiting, and waiting.

    Oh, by the way, the best sidekick for those miserable steriods? strawberry ice cream, and lots of it. LOL!

  • I get that attitude at my hospital everytime! If I have to go to an ER again I’m going out of the county closer to Atlanta, b/c my hospital ER doesn’t even BELIEVE in Fibromyalgia!!! Talk about Ignorant!!!!!

  • chris

    Once again, great article. I can’t even begin to count how many times this has happened to me.
    These two stand out in my mind most. A few years ago, I went to the ER because I was having brain TIA symptoms that weren’t subsiding. (I am already Legally blind, but I was “completely” blind this time. This really is pretty scary. Even for someone who can barely see, most of the the time, as it is)
    I told the doctors & nurses that I have Lupus, Secondary Raynaud’s Syndrom & Vasculitis. They looked at me like I was speaking a foreign language. I tried to explain what these are to them. Needless to say, That didn’t go over well with their, “I know everything. I’m a Doctor” attitudes. Obviously, they didn’t!
    They tried to give me Imutrex & said I was just having a migraine. Even though, I don’t have a history of migraines . hmm? Why didn’t the other 14 doctors(just to be diagnosed) that I’ve been to, think of that!? (sarcasm) :-/
    I tried to explain to them why I was NOT going to let them inject me with liquid stroke.
    That Imutrex would constrict my “already” overly constricted arteries & veins and would almost certainly, make everything worse. So, I now have (in big bold letters) in my ER records, “WOULD NOT ACEPT TREAMENT!”
    Now, because of this encounter, I am on the “Pay No Mind List”
    I went to the ER a different time because, my legs gave out from under me Twice,(Lupus affects my nervous system) & I fell don’t the stairs, & hurt my neck & back really bad. (The second time, I couldn’t even get up for a half an hour.) They wouldn’t even, take my paper work for “3 hours” & would completely ignore me when I asked them, how much longer it would be. I was so upset & angry, and I felt at that point, they weren’t going to help me at all. So, left.
    Now, I have a big visible, gap between my lower, cervical vertebrae. Still to this day, I have not had even so much as, an x ray. No one will order it.
    I don’t know how I could have handled these situations differently. I wish, there was more education for ER Drs. about Lupus. I wish, they would realize, we (lupus sufferers) don’t go to the ER to waste their time or ours. We too, have better things to do than, to sit in a waiting room for — hours, just to, not be taken seriously. But maybe, that’s asking for too much.

  • John

    So sorry to hear of your frustrating experience at the ER. It is a scary, frustrating and emotionally charged place.

    I care for my wife, who was diagnosed 10 years ago with auto-immune hepatitis. It’s been a downward spiral since with encephalopathy, cryptococcal meningitis, non-hodgkins lymphoma, more encephalopathy, internal bleeding, DVT’s, and more. Almost all of the illnesses can be traced back to needing to be on immuno-suppresives to keep the liver going. We’re finally at the point where she “might” be sick enough to be on the liver transplant list.

    The wait in the ER is painful. It’s frustrating and scary for me if my wife is brought in by ambulance, and I can’t be with her so they can “settle her in”.

    Our 12 yr-old son has had to be left alone or with neighbors more times than I can count. full days when Mom’s in a hepatic coma and in ICU.

    Blessings to you as you handle your health and family issues.

  • Nann

    an addendum: warn any friend or family member who is with you that you’ll have to show all the pain you normally hide! I just remembered my husband has trouble watching me even though he knows this. He’d be frantic without the warning!

  • Nann

    I’m sorry you had to go through this. It’s even worse when you don’t have a loved one there fighting with the staff to tell them how lousy you feel!

    I have a tip for folks when they go to the ER. One thing I’ve come to realize in 25 years of chronic illness(es) and pain, is that we should NEVER cover up our pain when around medical professionals. We get so accustomed to covering up in public and pretending our pain is not within millimeters of putting us over the edge that it’s difficult to let that wall down, but this is one time to let it all out! Moan, groan pant, gasp for air, do whatever you must to force them to realize how lousy you feel. Do what feels overly dramatic to you. Behave the way someone who is accustomed to feeling great would. Medical professionals go a lot by outward signs so give them those! It’s one way we can fight back.

  • Ailsa Price

    A friend of mine went to a local ER after an urgent care center told her she may have mono and needed to go to the ER ASAP. Five hours later she was still waiting in a back room, seeing no one for over two hours. Her sister convinced her to leave and go to another ER over the state line. She was in and out in less than two hours (with strep, not mono). As she was driving home the local ER called her cell and told her to get back to her room… they had just realized she was missing.
    I’ve never been to our ER myself. I figure I’d rather be in pain at home than in pain in a cold arse room sitting in plastic chairs.

  • Barb

    Stephanie, I’m so sorry for what you have been through this week. I could write a book about the ignorance of ER staff members when it comes to invisible illness. I lost track of the number of times I was told “But your son doesn’t LOOK like he has Ehlers Danlos” or “But your son isn’t acting like he’s in real pain”.

  • Cori

    great article! I have gone through a similar expierence in the ER. And Pluerisy is my #1 symptom… it sucks. I know.